Program Structure (2)

Are memory cafés community-based programs with a specific structure or are they loosely organized neighborhood social gatherings? The answer is both, and everything in between.

A little history on the memory café movement might be helpful first. The concept dates back to 1997, when a Dutch psychologist, Bère Miesen opened the first program in the Netherlands. His motivation was to provide a relaxed social venue where people could connect with peers and professionals to discuss dementia-related issues in an atmosphere that encouraged recognition and acceptance.

Dr. Miesen’s “Alzheimer’s Café” had a focus on socializing but also included psychological education about dementia and dementia caregiving. In terms of program format, the original café and current UK Alzheimer’s Cafés that follow Dr. Miesen’s philosophy, provide time for socializing before and after an educational presentation that is part of a themed sequence related to the progression of dementia-related symptoms. The official Alzheimer’s Café UK organization endorsed by Dr. Miesen has also published a set of program quality control criteria that they believe help to maintain the ‘core elements’ of the original Alzheimer’s café vision.

However, similar socially focused café programs with more variable formats have emerged from this original concept. And while “Alzheimer’s Café” originally referred to the type of program described above, this name, and names such as “memory café,” “dementia café” and “memory care café,” are now used for programs with a wide range of formats. Some café founders, particularly in the UK, have made the distinction that “Alzheimer’s cafés” are more structured and educational in nature. But keep in mind that there are programs with the “memory café” name in the US and the UK that provide structured activities or educational program elements, and programs with the “Alzheimer’s café” name that are primarily social in nature.

These nomenclature issues have led to some confusion. For this post and on this website generally, I plan to refer to the broader umbrella of café programs as memory cafés. It is my hope that the content presented here can be of use to all of these related café programs.

The one common denominator for all café formats seems to be providing a venue for social engagement in a nonjudgmental, relaxed atmosphere. Beyond that, the use of entertainment, activities, educational presentations, informal counseling, or other support elements varies widely from café to café.

Carole Larkin, a practicing geriatric care manager who has guided the development of five memory cafés in communities north of Dallas, says that she aimed to keep the format simple and costs low in order to facilitate the spread of memory cafés in the area. She describes their café format as very loose: provide food and drinks, and have a volunteer eldercare professional present to open the meeting and distribute name tags. After that, she says, attendees take over. In addition to making the cafés easy to develop and run, Larkin believes this minimalist format gives attendees a sense of ownership and creates a social normalcy that many structured community-based programs lack.

But Larkin confirms that across the US, café program structures do “run the gamut.” And that’s fitting because these programs are meant to be grassroots efforts that meet the specific social, cultural and logistical needs of the people who attend them.

Café program format can also change over time. Lori La Bey, founder of Arthur’s Memory Café in Roseville MN, says they started out with games and icebreaker activities as people were getting to know one another, but with time, there has been a shift towards simply having informal conversation. Larkin says this has been true for the suburban Dallas cafés as well, and adds that a bin of games and puzzles continues to be available as an option at their meetings.

Memory Cafés sometimes take on a more structured format in rural areas where communities have fewer adult day program and support group options. In the Cornwall region of the UK, which is fairly rural, most memory cafés have activities such as reminiscence-oriented games and quizzes. Some also have social workers available to answer questions on an informal basis and others incorporate a 'caregiver's corner' feature, which provides additional respite opportunities for caregivers.

Activities offered by cafés may also be a matter of available talent. A new memory café just starting up in San Francisco, headed by Caitlin Morgan and Patricia Ris, offers art activities at their café meetings in part because Ris has a background in developing artistic enrichment programs for older adults.

So perhaps the answer to the question to structure or not to structure, depends on the needs of the community and the resources that are available. The key may be to continue the conversation about how the format is meeting the community’s expectations as the memory café evolves.

In the US, fewer than 20% of dementia caregivers use respite services. In fact, the majority are not even using general support services until the later stages of disease set in. And we know that the chronic stress that results from not getting a break can wreak havoc on a caregiver’s physical and mental well-being.

That’s why I sat up and took notice of the Caregivers’ Corner, a program feature now being used very effectively by several memory cafés in the Cornwall region of the UK. The Caregivers’ Corner is a table set off to one side of the memory café meeting room, where caregivers can come together for a portion of the meeting to share caregiving concerns and tips, separate from those they are caring for. Having this social time with other caregivers also provides an opportunity for a short break from caregiving.

It sounds simple conceptually, but if I had not seen it in action, I would have wondered how this could be done in a way that is respectful and maintains social inclusiveness. In an established memory café, where relationships have already formed, the idea that this table is just for caregivers can be made subtly through word of mouth, and gently maintained with the help of café volunteers. The Caregivers’ Corner that I observed participated in the group activities, but the placement of the table at a distance from the rest of the tables seamlessly provided a needed break for participating caregivers. Sue McDermott, the Cornwall Memory Café Network Facilitator, says that the Caregivers’ Corner also provides an important opportunity for guests with memory loss to experience independence and engage with peers on their own terms.

The success of these Caregivers’ Corners suggests that the social nature of memory cafés can cultivate a level of trust and connection that allows caregivers to participate in a respite experience that they may not seek out in a more formal context, and gives guests with memory loss an opportunity for some independence without the separation anxiety that can occur when caregivers are completely absent. It would be interesting to know whether participating in Caregivers’ Corners also helps caregivers consider a move towards using more formal respite options available in their community. But either way, the Caregivers’ Corner is a simple and respectful way for memory café programs to enhance their ability to provide patrons with peer connection and a much-needed break from their normal routines.